I became an Alzheimer's caregiver the week of my 29th birthday. It was August 2012, and I was standing at my kitchen counter in Washington when I got a call from a family friend telling me, "We have a problem." My father had been hospitalized with congestive heart failure. For seven years, he'd been the primary caregiver for his older sister, who had Alzheimer's disease. Without his oversight, she had followed his hospitalization with one of her own after collapsing in her bedroom from dehydration, or low blood sugar, or both. My 66-year-old aunt was a widow with no children. My father was a divorced bachelor, and I was an only child. They were my responsibility.

I had thought I would drive the eight hours to my hometown in South Carolina to get my aunt, Jackie Belcoe, settled back at home, and perhaps hire a nurse to come help out during the day. But when I got there, I found a much graver situation than I had expected.

Tucked into her hospital bed at Lexington Medical Center, Jackie looked so frail and sick that it was heartbreaking. She had been a hairdresser for many years and once owned her own salon. She was the woman who taught me to wear lipstick, who never left the house without her mascara on and her blond bob perfectly styled. Now, her hair was matted and unkempt. She needed a bath and her teeth brushed.

In the emergency room, a nurse had cut the urine-soaked T-shirt off her  body. When the paramedics found her, she told them she was 19 and lived at home with her parents.

Though her parents were no longer alive, it was true that she lived in the house where she had grown up. I soon learned that conditions there were as deplorable as the state she was found in. Her bed and sheets were soiled, and dirty laundry had been left beside the washer. A trail of feces stained the carpet from the bed to the bathroom. It was clear that Jackie, like many late-stage dementia patients, had become incontinent—a fact that perhaps a caregiver who was also a brother was too ashamed to admit. Full trash bags were piled in the kitchen. Shards of broken cups were scattered on the floor. The mess had attracted pests, and mice and flies had invaded the brick ranch house.

My dad fought me when I first suggested moving Jackie to an assisted-living facility.

I traced the chaos to my father's own declining health. That spring, after years with a weak heart, he took leave from work. He tried to stay upbeat and not worry me. I had stopped by to see them in recent months, but kept my visit short. It was so hard, seeing Jackie the way she was. Now, I wondered, how had I missed that something was terribly wrong? Or had I just not wanted to see?

For years, I had been pressuring my dad to think about the long-term plan. What would we do if Jackie needed more support than we could provide at home? Should we decide on a facility where we could place her if the time came?

We had to consider a nursing home, I assumed. My hand had been forced. Naively, at first I didn't think about the money involved. It had been a relief when Jackie reached age 65, with all its attendant public benefits. Surely, I thought, Medicare would cover the kind of care she needed.

"There is nothing medically wrong with her," the hospital social worker told me.

I was incredulous. "What do you mean nothing is wrong with her?" I implored. "Her brain is decaying. If she was left alone, she would die."

(Adrià Fruitós)The social worker informed me that there was nothing wrong with Jackie that warranted a longer hospital stay or a transfer to a skilled nursing home. What she meant was that Jackie needed custodial care—help with eating, dressing, and bathing. She needed a watchful eye, the adult equivalent of day care. She did not need the assistance of a registered nurse or another medical professional who could administer IVs or monitor complicated equipment and treatments.

Medicare pays for hospital stays and short-term, skilled nursing care for older Americans. It does not cover the kind of custodial care Jackie required, and it generally does not pay for long-term stays in a nursing home or a dementia care unit, a fact nearly 40 percent of Americans over 40 don't fully realize, according to a poll from the Associated Press-NORC Center for Public Affairs Research. Medicaid, designed to provide health care to the poorest Americans, can pay for nursing home residence and long-term care. However, in some states, such as South Carolina, it cannot be used to cover room and board in assisted living or an assisted-living facility's dementia care unit—that is, the kinds of places that provide custodial care to those who don't qualify for nursing homes. Medicaid supports some at-home services, but only if states apply for waivers. (There is also a program in South Carolina and other states that can supplement payments to assisted-living facilities for Medicaid-eligible residents, but Jackie, like many other seniors, did not meet its stringent income and resource limits.)

Jackie did not qualify for Medicaid outright: Her assets and her monthly Social Security income of $1,223 disqualified her from South Carolina's basic 2012 Medicaid limits of $2,000 in resources and a monthly income of just over $900 (the limit is now $973). Given her needs, she could have possibly qualified for some in-home benefits—such as visits from a nursing aide—through the state's Medicaid programs, some of which have higher income thresholds. But it would have taken months to get through the paperwork, and even with some Medicaid supports, I knew she needed full-time caregiving, a role my father could no longer fulfill.

My dad fought me when I first suggested moving Jackie to an assisted-living facility. He didn't want to institutionalize her. He also didn't know how we were going to pay for it.

I soon learned what my father already knew: Brochure after brochure in his files showed glossy photos of luxury dementia care units in our area with 24-hour supervision, secured access to prevent patients from wandering, and life-enrichment programs for the memory-impaired. I called them. A family member toured many of them. Most cost between $4,000 and $6,000 a month out-of-pocket. My dad made just under $29,000 a year working as a welder in the maintenance department at the University of South Carolina. His house was on the brink of foreclosure. Years of health crises had left him and Jackie with very little savings. The annual cost of an assisted-living facility with dementia care was more than double what my father made annually and nearly four times Jackie's income. What I had assumed was procrastination or denial on my father's part was really paralysis.

Hospitals, though, do not like you to overstay your welcome, and Jackie had not been a model patient. More than once, she had gotten out of bed and wandered down the hall and into other patients' rooms. She got agitated, and the staff had to physically restrain her, wrapping her in a vest so she could no longer move. She grew so fitful that a doctor prescribed her a regimen of anti-anxiety drugs, hoping she would just go to sleep.

On the day Jackie was discharged, it was nearly impossible to wake her. The combination of medication and a new environment had made her sleeping patterns even more erratic than usual. She appeared lethargic to the point of being catatonic.

Soon, however, she became more aggresive. She gripped the sheets tighter each time I tried to remove them. When I finally had her sitting up, she didn't want to put on the pair of pants I had brought her. I lifted her hospital gown to put them on her myself. "Stop! Stop!" she yelled. "What are you doing?" In a flash of anger, she pulled her fist back to hit me. She relented when I grabbed her hand.

"What are you doing?" she kept repeating, as we fought over getting dressed. "What are you doing?"

The truth was I didn't know what I was doing. And I didn't know what we were going to do.

THE FIRST DIAGNOSED Alzheimer's patient was a woman named Auguste Deter, who entered a German mental hospital in 1901, at the age of 51, after her family could no longer care for her at home. Her memory and language skills were poor, she had not been sleeping, and she seemed delusional. "I have lost myself," she told Dr. Alois Alzheimer, the physician who examined her. Deter spent the next four and a half years institutionalized, as her mind and body functions deteriorated. She died in 1906, and afterward, when Alzheimer examined her brain tissue under a microscope, he spotted the atrophy, tangles, and plaques that still signify the disease.

Memory loss has been associated with aging for millennia, but it was not until after Dr. Alzheimer's discovery that scientists really began to wonder whether senility was an abnormal part of growing old. Until the 20th century, life expectancy for Americans was relatively low by today's standards (around 47 years in 1900). But as more and more people lived into their 70s and 80s, to the years when dementia most often strikes, the disease became much more common. In 1974, Congress passed a law establishing the National Institute on Aging to deal with the burgeoning elderly population's needs. Within a decade of its launch, NIA had established 10 Alzheimer's disease research centers. At the same time, there was a growing public awareness of the condition. President Reagan designated National Alzheimer's Disease Week in November 1982, only to reveal his own struggle with the  illness a dozen years later.

Jackie Belcoe at work in her salon in the early 1980's. (Courtesy of the Stanley Family)Today, as the baby boomers age, Alzheimer's has reached epidemic proportions. More than 5 million Americans currently have the disease, with more than 400,000 new cases each year—numbers that are expected to at least double by 2050. While Alzheimer's is the most common cause of dementia, there are dozens of related disorders, including Parkinson's, dementia with Lewy bodies, vascular dementia, and fronto-temporal dementia.

The rhetoric around Alzheimer's advocacy in recent years has been focused on finding a cure. But the U.S. government spends less than $600 million annually on Alzheimer's research—compared with $3 billion for HIV/AIDS and more than $5 billion for cancer. And of the 10 leading causes of death in the United States, Alzheimer's is the only one without a means to prevent or treat it. Although decades of research have yielded important discoveries, Alzheimer's largely remains a mystery. "Anybody who says we're getting close to a cure is lying," says Howard Gleckman, a senior fellow at the Urban Institute and an elder-care expert.

Lost too often in the discussion about a cure has been a much more basic, more immediate, and in many ways more important question: How can we better care for those who suffer from the disease? Dementia comes with staggering economic consequences, but it's not the drugs or medical interventions that have the biggest price tag; it's the care that dementia patients need. Last year, a landmark Rand study identified dementia as the most expensive American ailment. The study estimated that dementia care purchased in the marketplace—including nursing-home stays and Medicare expenditures—cost $109 billion in 2010, more than was spent on heart disease or cancer. "It's so costly because of the intensity of care that a demented person requires," Michael Hurd, who led the study, told me. Society spends up to $56,000 for each dementia case annually, and the price of dementia care nationwide increases to $215 billion per year when the value of informal care from relatives and volunteers is included.

Most of the care provided to Americans with dementia comes from unpaid family members. "Family caregivers really are the backbone of long-term care in this country," says John Schall of the Caregiver Action Network. A majority of dementia patients live and die at home—which saves taxpayers in the long run but forces caregivers to sacrifice work and wages. Caregiving can be a long, grueling task: Alzheimer's patients live, on average, eight to 10 years after diagnosis, and they eventually need round-the-clock care. There are more than 15 million unpaid dementia caregivers in the United States, according to the Alzheimer's Association. Most of them are women, though a growing number are men; nearly 1 million are between the ages of 18 and 29; some are seniors themselves, caring for a disabled spouse; and many are in their 40s and 50s, still working, and sometimes caring for children and an aging parent. At the same time, family systems are changing, with fewer children born to help older adults, and more mobile populations, meaning families live hundreds of miles apart, severing the support networks that traditionally helped spread the burden of care.

More than 5 million Americans currently have the disease, with more than 400,000 new cases each year—numbers that are expected to at least double by 2050.

"We have no rational policy to support caregivers," says Dr. Joanne Lynn, director of the Altarum Institute's Center for Elder Care and Advanced Illness. Public supports such as Medicare and Medicaid do not adequately cover the care dementia patients need at home. There are not appropriate Medicare reimbursements for a family member to meet with medical personnel about care plans and ongoing supports. State programs for relief services—such as respite care or adult day programs that allow family members to take a break—are sporadic. Meanwhile, the average cost of caring for a patient in a skilled nursing facility is more than $80,000 a year. As Dr. Bruce Chernof of the SCAN Foundation, which advocates for better care of older adults, puts it: "We need to move beyond saying family caregivers need to be 'supported,' and we need to begin to really think about what that means."

For years, the go-to public-policy stance has been to recommend that more people buy long-term-care insurance, but very few do. According to the Robert Wood Johnson Foundation, less than 8 percent of Americans have purchased long-term-care insurance policies that could be drawn on in the case of cognitive impairment. These policies can be expensive, and the price only goes up for individuals as they age and their health worsens; moreover, the financial burden may be compounded when they move onto fixed incomes. In recent years, companies have been pulling out of the long-term-care market, finding the policies unsustainable. Some now only offer policies that provide three to five years of care—about half of the time a typical Alzheimer's patient needs support.

The Affordable Care Act tried to remedy the dearth of options. Enacted as part of the health care legislation, the CLASS Act offered voluntary, public long-term-care insurance. But in 2011, the Obama administration canceled the program before it ever got started, saying that it was not financially feasible. "It was not structured in a way that would get enough participation among the healthy to support the populations that would be served," says Judy Feder, a public-policy professor at Georgetown University who researches long-term care.

Without an insurance safety net, the other option is for Americans to save enough for retirement to cover expenses out-of-pocket, but, again, very few do. The median amount that working-age American households have saved for retirement is $3,000, according to a National Institute on Retirement Security survey, and the Robert Wood Johnson Foundation reports that less than 10 percent of Americans save specifically for long-term care. "The full risk and caregiving burden and financial burden falls on the people who unpredictably get hit with long-term care needs," Feder says. "The money and the service is coming from somewhere—it's coming at enormous cost, personal as well as financial, for families."

These long-term-care costs were certainly a crucial factor for my family. In those first days in South Carolina, as I sifted through Jackie's financial records, I found a copy of her old long-term-care policy. A few years before, my dad had begun to fill out a claim, only to find that Jackie had recently canceled the policy. We still don't know why she stopped the plan—the cost, maybe? By the time we thought to ask, her mind was too far gone to know.

Without that slip of paper, our options were limited and the prices were high. So it seemed like a boon when we came across Lexington Gardens, an assisted-living facility two miles from my dad's house. He could visit her whenever he wanted. It was clean and bright and had the feel of an upscale apartment building. It did not have a dementia care unit, but the staff assured me that many residents had dementia and the staff was experienced in caring for residents with memory impairment. At $2,350 a month, it was by far the most affordable option we found. A staffer even mentioned that the cost might go down after Jackie had settled in and needed less help. They put her in a private room on the second floor. At our request, they painted the walls a happy shade of yellow. Extended family helped me haul pieces of her furniture upstairs, and we hung artwork from her home, all meant to give the space some sense of familiarity.

On her first night in the new room, I hesitated to leave her. I couldn't decide whether to shut her door—what if she needed something? Who would hear her call? As I left, I kept the door open a crack and, walking away, hoped for the best.

THERE IS A STORY told in my family about a defining moment in the lives of my father and aunt. My dad was 18, the last child living at home, when his mother collapsed in the den, likely from a stroke. He ran to her, and she died in his arms. Her death, while sudden, was not unexpected. From the time my father was born, his mother's body was riddled with diabetes, in an era when the disease meant a certain, steady decline. She suffered a series of debilitating strokes, and by the time he was 12, she had gone blind. Jackie was the only girl in the family and became a surrogate mother. She cooked and she cleaned and she took care of her younger brother.

Jackie, on the left, with her father, older brother Jimmy, and younger brother John in the early 1950s. "When I think of Jackie's relationship to my father, John, it is this: part sister, part mother." (Courtesy of the Stanley Family)When I think of Jackie's relationship to my father, John, it is this: part sister, part mother. Their bond puts his eventual care of her into sharper focus. After he and my mother divorced, my father moved back to his family homestead, to the house next to Jackie's. My aunt decorated my room with a floral bedspread and matching curtains. I was nine at the time, and most of the weekends I spent with my dad were really spent next door at Jackie's house, on her screened-in back porch or sitting with her in the den. She was the keeper of our family stories, the one with all the photo albums and recipes. Every holiday and most Saturdays, I was there in her kitchen, eating at her table.

My aunt was married then, and had been since 1971. Her marriage to my Uncle Gerry was not a happy union. He was a stern man and often absent, away working shifts as a security guard and later as a police officer. Though they never divorced, he finally left while I was in college. He took their savings, opened a line of credit on their house, and moved to Costa Rica. I suspect now that, as her spouse, he saw what we would later learn: that her mind was failing and falling further into dementia. He came home once, but after seeing Jackie's diminished state, he told my father, "I'm not ever coming back again." He died in 2011 of a heart attack, leaving Jackie none of his  assets. My father and I arranged through the embassy in San Jose to have his body cremated and his ashes scattered off the coast.

By then, it had been six years since I had first noticed something was wrong with Jackie. In 2005, on a trip to my college graduation, she forgot her insulin—a mistake so unlike her, given her mother's history. A relative had to drive her to a 24-hour pharmacy in the middle of the night. Three months later, when my father was having another round of heart surgery, Jackie was with me in the waiting room, but she seemed confused and incapable of helping me make important decisions. Later that summer, she would call me at odd hours, in tears. She wasn't sleeping, she said. Soon she stopped calling me altogether.

That fall, after a battery of tests, we had an answer: dementia. Later, it was labeled probable early-onset Alzheimer's. A lawyer prepared a living will and power-of-attorney papers, which I signed along with my dad. I had always known I would take care of Jackie in her old age. But dementia at age 59 was not what any of us had imagined.

In the initial stages of the disease, my dad and aunt managed quite well. He would walk the well-worn path between their yards, waking her in the morning, cooking her meals, and putting her to bed at night. His job was just a six-minute drive away from their homes, so he could drop by to check on her during the day. She wasn't a wanderer then, and she easily handed over the keys to her car.

My dad kept a burgundy binder for Jackie with hand-drawn charts, where she recorded her daily activities, keeping a log for doctors' visits. She could note which medicines she took at what hour, how she was sleeping and feeling. "I've just gotten up. Boy, do I feel rested," she wrote in May 2007. In the early years, she could busy herself around the house. "Thursday morning, worked in yard, pulling weeds and creating a new flower bed." But still she knew she wasn't well. "It's 3:16 a.m. and I'm still up," she wrote. "I must remember to set an alarm. … I've got to get back to a normal, day-and-night schedule."

My father became increasingly worried about their futures, and he fretted especially about money. The truth was that Jackie had always been a spender, not a saver. She was terrible with money and had only gotten worse with it as her Alzheimer's progressed, which is typical of those with the disease. Once, my dad came home to find a pile of boxes from a home-shopping network filled with expensive orders she didn't remember. She racked up more than $30,000 on her credit cards before he realized it, closed the accounts, and started working with the companies to pay off her debt. The disease seemed to age him alongside her.

Health care providers often didn't know what to tell me. "I don't want to blame my primary-care colleagues, but they haven't been trained," says Dr. Pierre Tariot.

Alzheimer's places a heavy toll on family caregivers. Their own health suffers. Dementia caregivers report higher rates of depression and stress than the general population. Some studies show they have an increased risk for heart disease and stroke as well as higher mortality rates. Their own use of medical services, including emergency-room visits and doctors' appointments, goes up, and their yearly health care costs increase by nearly $5,000, according to research from the University of Pittsburgh and the National Alliance for Caregiving. "Caring for a person with dementia is particularly challenging, causing more severe negative health effects than other types of caregiving," reads an article in the American Journal of Nursing.

When I brought my father home from the hospital, his heart and kidneys were failing. There was talk of more surgery, but only to give him a better quality of life, not to cure him. His body was breaking down, and his own hold on life, we both knew, was tenuous.

AFTER JACKIE HAD lived at Lexington Gardens a few months, I wondered if I had made a mistake. The staff did not seem well trained to handle Alzheimer's after all. They would try to administer her medication in the early evening, even though this was the time of day she was most agitated—a very common syndrome in dementia patients, called sundowning. After an inspection from the state health department, Lexington Gardens informed me that they had been told to move Jackie from the second to the first floor because she couldn't walk well. She was getting frequent urinary tract infections. Staffers didn't seem to keep her on a schedule. Several times when I stopped by after 11 a.m. she was still in bed, not dressed or fed or toileted, which I felt only made her night outbursts more frequent.

I got calls from Lexington Gardens in the middle of the night and at the office. I had trouble sleeping. My job suffered. I barely wrote anything. I took days and weeks off. I answered work calls from the assisted-living parking lot. I tried to work in waiting rooms.

In some respects, it felt hard to complain about the facility, though. Many of the staffers were nursing aides and medication technicians making low wages—on average these jobs pay between $8 and $12 an hour—and they labored long hours doing the work I deemed too difficult.

Some incidents were more dangerous than others. One night, a staff member called to let me know that Jackie had walked out the back door unnoticed and wandered over to a nearby building. Another time, the facility notified me that Jackie had gone out the front door and was found sitting on the sidewalk. How long she was out there, I don't know. Lexington Gardens sits on a frontage road where cars speed past. Just over a grassy hill is a busy interstate. All I could think about was what would have happened if she had walked a little farther.

(Adrià Fruitós)Jackie was also falling frequently. She was found in the kitchen on the floor; she was found repeatedly on the floor of her room, according to her medical records. Each time, the facility would send her unaccompanied to the emergency room to be examined. (This is not an unusual practice for some assisted-living facilities.) Jackie went to the ER 11 times in nine months for mostly routine examinations. My mother often became the proxy for her former sister-in-law when I wasn't in town. She would meet her at the hospital and keep me posted if I needed to catch the next flight home.

The hospital seemed like the least efficient place to treat Jackie. "You go in hospital emergency departments and they're filled with patients with dementia who are there because they fell, because they got bedsores or urinary tract infections, because they wandered," Gleckman explains. Says Carol Steinberg of the Alzheimer's Foundation of America: "Because there is a lack of medical-school training in dementia care, sometimes I think there's a lack of understanding on the part of the hospital staff. If you think of a typical ER—massive confusion, crowds of people—then think of an Alzheimer's patient who has confusion already and limited communication skills, that environment can be very frightening at a time when a person's health is at risk already."

Health care providers often didn't know what to tell me. I couldn't seem to find an expert who could really help me navigate the system. "I don't want to blame my primary-care colleagues, but they haven't been trained," says Dr. Pierre Tariot, an internist and psychiatrist who runs the Banner Alzheimer's Institute. Only "a very small minority of patients with dementia" are treated appropriately for their diagnosis, he explains. Meanwhile, "more than half of dementia patients receive grossly inappropriate treatment that actually makes symptoms worse," including drugs to calm agitation that make patients more prone to falling.

After one of my aunt's more harrowing trips to the hospital, a kind emergency-room doctor wrote the name of a neurologist she trusted on a slip of paper. We had an appointment the following month, and that specialist was the closest I ever came to coordinating Jackie's care. But aside from removing extraneous drugs from Jackie's regimen, there wasn't much she could do. It was hard to tell where Jackie fit in the Alzheimer's staging process. Given her youth and her relatively good physical health, the neurologist advised me to prepare for the long haul: She could live with the disease another 10 years.

To prepare financially for the impending decade, I began selling off Jackie's possessions. I hired an auction house to sell anything of value—her china, her furniture, her silver. A veteran bought her used car. A local jeweler offered cash for her gold bangles and necklaces. For a few months, checks began showing up, in amounts of $100 and $500 and $2,000. But the money was gone to the assisted-living facility almost as soon as it arrived.

By chance, I also discovered that there was one bright spot in Jackie's marriage to Gerry: Through him, she was entitled to monetary military benefits. Gerry had been a decorated Vietnam veteran and served in the Army for more than 20 years, and Jackie should have been receiving a pension since his death. She was also due funds from the underused and little-known Aid and Attendance program, which supplements the pensions of veterans and their spouses to meet needs including custodial care. Both benefits together could have given Jackie an additional income of at least $2,500 per month. I filled out the paperwork with the Veterans Benefits Administration. We were told to sit tight. The process for Aid and Attendance can take up to nine months or more. So we waited.

MY FATHER DIED on a Saturday morning at the end of October 2012. I was underground on the New York City subway when I found out. A family member had been trying to reach me and couldn't because of the lack of cell service, so in her own state of shock she frantically texted, "911 911 please call johnny passed!"—which went through. At the next stop I rushed out of the station and up the stairs, exiting somewhere on the Upper West Side. I called my mom. I started crying hysterically. A man digging through a garbage can asked if I was OK. Two women saw me from the corner and rushed to my side. "My dad died," I told them. "My dad just died." They hailed me a taxi, which whisked me off to the airport and onto a flight to South Carolina.

The day my father died, he had gotten up and showered. He was freshly shaven when he was found. He had the radio on, and his lunch was cooking in the oven. Somewhere in the midst of this routine, he sat down on the sofa and closed his eyes and didn't wake up. In a way, it was the ending he had wanted. He died at home, not in a hospital. He was 63.

I decided to tell Jackie the news, against the advice of some clinicians and on the advice of others. No one seemed in agreement on whether it would inflict undue pain, and I felt a compulsion to let her know, even if she didn't remember. Perhaps it was selfish; she was the only other person who would have mourned him like I did. When I told her, she said she couldn't believe it. She didn't cry. We sat in silence for a few minutes. Then she said, "My mother will be here soon." "She will?" I asked. "We're going to Georgia for a funeral," she said, and began to recall in barely coherent phrases the death of a relative who had passed some 60 years ago.

For months afterward, when we got into the car or were sitting at the doctor's office, Jackie would ask, "Where is Johnny? Have you seen Johnny?" And I would reply, in the calmest voice I could muster, "He's not here right now," as if at any moment he would walk through the door.

IN JANUARY 2013, Jackie's primary-care doctor, whom she saw through Lexington Gardens, spotted a sore on the bottom of her toe. Such lesions can be dangerous for the ill or elderly, especially those with a history of diabetes; they can lead to infection, gangrene, or possible amputation. Lexington Gardens had just hired a new resident care director, who called to let me know that the situation was being handled. She said Jackie needed to see a wound-care specialist as soon as possible and that she would make the arrangements. But in late March, I learned that Jackie had not been to the specialist at all over the past two months.

I kept thinking if I could just get her veterans' benefits, if I could just sell her house, if I could just get my feet under me, we could find a better situation.

In a meeting the next day with the executive director and another staffer, I was told the care director responsible for that lapse had left some weeks before for unrelated reasons. I also learned there were limits to how long a resident can stay in assisted living with a wound like Jackie's. Her foot was noticeably worse. She would now need home health nurses to come in several times a week to change bandages, and she would need weekly appointments at a local wound-care center.

She would also need more-intensive care at the facility—including added assistance getting to and from meals, more frequent safety checks, and extra help with hygiene. For these tasks and others, we would need to pay Lexington Gardens a higher rate of $3,220 per month, which I signed off on. One of the most dedicated staffers took to keeping Jackie in the office with her, to make sure she didn't fall. I wanted the arrangement to work. I knew that transferring her to another facility with more supports would be twice the cost. I kept thinking if I could just get her veterans' benefits, if I could just sell her house, if I could just get my feet under me, we could find a better situation.

Ultimately, the decision wasn't mine to make. Three weeks after my meeting with the executive director, I received a letter in the mail from Lexington Gardens. "In review of Ms. Belcoe's incidents and her daily care needs, it appears that Ms. Belcoe has reached her maximum benefit from residing in an assisted living environment," the executive director wrote. "Ms. Belcoe has had some type of unsafe event every month consistently since August 2012. She remains an extremely high fall risk and her cognition has declined to the point where she has become a threat to herself."

Jackie was being kicked out. In hindsight, it was the responsible thing for Lexington Gardens to do: The home simply wasn't capable of taking care of a patient at her stage of dementia. The problem was that the types of homes which could provide this care all seemed out of our price range. Still, I had no choice: I had 30 days to find her a new place to live.

Assisted-living facilities are regulated by the states, unlike nursing homes, which are regulated by the federal government. Assisted living has become a booming industry over the last 20 years and provides many Americans with stopgap care that is less intensive than the skilled medical assistance provided by nursing homes. Despite the lower level of care, these facilities often house very ill people, including those with advanced dementia. (At least 42 percent of assisted-living residents have dementia, according to the Centers for Disease Control and Prevention.) The definition of what constitutes an assisted-living facility is murky, and the quality of care varies. These facilities can range from dementia care units for late-stage Alzheimer's patients to rooms that a health care worker rents out of his or her private home. "Some of these places are absolute hellholes," Gleckman says. "They're frankly dangerous, and you need to have enough regulation to prevent that."

Lexington Gardens was part of Emeritus Senior Living, the largest chain of assisted-living facilities in the country. Two months after Jackie was discharged from Lexington Gardens, ProPublica and Frontline released an investigative series alleging a host of problems and neglect at Emeritus residences. Reporters A.C. Thompson and Jonathan Jones wrote that in 2004 a woman with Alzheimer's in a Texas Emeritus facility had wandered outside and frozen to death. At an Emeritus home in Georgia in 2009, a man with dementia died after swallowing dishwashing liquid that was supposed to be in a secured cabinet. In 2012, a woman in a Pennsylvania Emeritus facility died in a locked bathroom, and it took the staff 36 hours to notice. In some of the reported incidents, families had already brought lawsuits against Emeritus; one case involved a woman who died after her wounds were not properly treated, resulting in a $22.9 million verdict against the company.

In an employee memo at the time (which ProPublica published), Emeritus characterized the series as an account of "some isolated and unfortunate incidents." The company encouraged staff members to post positive comments about Emeritus through social media "to offset the potential negative backlash created." Its public-relations team created a website called Emeritus Facts to counter 29 negative claims in the report. Recently, company spokeswoman Kristin Puckett told me via email, "The incidents that Frontline/ProPublica featured happened years ago and were exceptions to the quality care that takes place in our communities. We continue to make sure that our associates are well trained and our company has policies and procedures in place that promote quality care."

Jackie's home in West Columbia, South Carolina.  (Courtesy of the Stanley Family)In February 2014, Thompson broke the news that Emeritus was under federal investigation for its billing and business practices. Puckett told me that the company is "cooperating fully with this ongoing investigation." (Lexington Gardens was not mentioned in the original ProPublica/Frontline series, or in Thompson's February report.) On July 31, 2014, Emeritus merged with another large company, Brookdale Senior Living. The merger means the new company—to be known as Brookdale Senior Living—will now care for more than 112,000 seniors in 46 states.

Less than a year after we left Lexington Gardens, but before the merger with Brookdale, there was a complete turnover in the facility's management staff, except for maintenance, according to the home's online newsletter—a shift the company confirmed. Lexington Gardens did not comment for this article, referring questions to Brookdale, though it did send me a copy of Jackie's records. Due to privacy concerns, Brookdale would not comment on the specifics of Jackie's care.

Last year, I sent a letter to the South Carolina Department of Health and Environmental Control, detailing our family's experiences at the facility. An official called me after he received my note and said the department would be looking into the case. When I followed up recently, I received a letter from the department stating that inspectors made an unannounced visit to Lexington Gardens in June 2014. They found that the facility was in violation of state laws and rules "in the areas of enforcing regulations, record maintenance, resident care/services and resident physical examination." According to Puckett, "A plan of correction was submitted to the state within the required 15 days after receiving the citation." She added, "The community has implemented the corrective action and is awaiting the state's annual inspection."

LAST SUMMER, I began reaching out to other families dealing with Alzheimer's. I wondered whether my family was alone in our struggles. What began as a personal endeavor quickly became a reporting project as I called people from local support groups, online networks, and regional chapters of the Alzheimer's Association. Most of the family caregivers I found were as lost as I was.

I talked to a 75-year-old man taking care of his 82-year-old wife with Alzheimer's. He had to keep working to support them, so he left her home during the day. "We've got a gas stove, and I've got to make sure the burners are off," he said. Nights had so far been calm, but she wandered sometimes. "A couple of neighbors have caught her down at the end of the street. What kind of locks do I have to put on the door?" he asked me.

In Northern Virginia, I sat at Sarah Harris's kitchen table and listened to her describe the night she decided to institutionalize her husband, who eventually died from Alzheimer's. "He didn't sleep at all. He walked around the house. He would walk and walk," she said. "It was probably the one time that I was fearful. I was afraid to go to sleep because I didn't know what he was going to do." He cycled through three different facilities during the last two years of his life. "The first home, I hate to say it, but they were abusing him." She said she found him soiled and tied down in restraints. The next assisted-living facility kicked him out because they were afraid he would injure another resident.

Joan Gershman, who lives in Florida, detailed her battles with Medicaid to get help for her husband in the months before he qualified for a nursing home. "You have to fight for every single thing. They deny, deny, deny. I asked for help at night because I couldn't shower and change him by myself. 'We'll give you three days a week.' When I said I needed more, they said, 'You have to put him in assisted living.' 'I can't afford assisted living.' They said, 'That's too bad.' "

In a support group I attended as a reporter, a woman about my age cried over putting her early-onset mother in a facility. For years, through college and after, she had shared an apartment with her mother so she could take care of her, but eventually she no longer could.

She was still funny. She tried to tell jokes. She liked riding in the car and eating ice cream. But the prospect of being her at-home caregiver was also terrifying.

I began to think about bringing Jackie home to live with me. I was spending so much time with her and beginning to know her again and see the parts of her that had not disappeared. She was still funny. She tried to tell jokes. She liked riding in the car and eating ice cream. But the prospect of being her at-home caregiver was also terrifying. I would likely have to quit my job and leave behind my career, which I didn't want to do. It was also unclear how we would make ends meet if I did. Some states have programs that pay family caregivers out of Medicaid funds, but the District of Columbia, where I live, does not. In South Carolina, I could have been paid as a caregiver if I was related to Jackie but not if I was her legal guardian, which I was. Then there was the matter of duration. I could imagine taking care of Jackie for a year, maybe two—but 10?

MaryAnne Sterling's story resonated. An only child, she had been caring for her aging parents, both of whom developed dementia, since she was 30. Last year, after she turned 47, she and her husband realized they needed to start thinking about their own futures. She said, "We don't have children. We don't want to be a burden on anybody. If we don't begin saving earnestly for retirement, who's going to look after us?"

On an NBC broadcast with Maria Shriver, I heard Jim Crabtree's experience, which was particularly chilling. His wife was diagnosed with Alzheimer's at 57. "I was looking at 10 years of care at six grand a month. Who has the money to do that?" he said to the camera. His ailing parents often looked after his wife while he was at work. In 2013, his 84-year-old father, who also had dementia, shot Crabtree's wife and mother before killing himself. "It sounds like a horrible, violent end, but in actuality it was a euthanasia that my father did," Crabtree said. He called the triple murder-suicide a "mercy killing."

JACKIE STILL DID not qualify for skilled nursing care under Medicare, so her next assisted-living placement was at Agapé Senior in West Columbia, which was one of the few organizations in our area that had "continuum of care" options, meaning that Jackie could advance from assisted living to specialized dementia care, then through nursing care to hospice. She wouldn't have to change homes again.

Agapé assessed Jackie as eligible for its enhanced-care assisted-living facility, which was a step before their dementia care unit. We couldn't afford the monthly payments of $5,595, and we could barely afford the $3,500 application fee, but Agapé had a foundation, and we were admitted on scholarship. The deal was I had to pay them back any money borrowed from the foundation once I sold Jackie's house or her VA benefits came through. The day I moved her in, though, I found out that in order for her to be eligible for foundation support, I would need to spend the rest of the $5,000 I had set aside in a savings account. I quibbled with an administrator, because I still had outstanding hospital bills and pharmacy payments for her. "What are you worried about? Her credit?" he said. "Let me ask you this: What's the worst that can happen if you don't pay those bills?"

In a sense, he was right. He also knew we were in the process of "spending down," which meant we were using all of Jackie's assets until she qualified for Medicaid. She would likely be eligible once she had only $2,000 in resources left. In the best worst-case scenario, by the time we ran through her remaining assets, she would also be ill enough to be admitted to a skilled nursing home, where the government would be more likely to pick up the tab through Medicaid. Agapé's foundation might also aid us. Otherwise, I would have to fund the bulk of her care on my own—a daunting financial burden many caregivers face.

Jackie in the late 1970s. (Courtesy of the Stanley Family)Medicaid pays for almost two-thirds of U.S. long-term-care costs. But not all nursing homes accept Medicaid, and there are waiting lists around the country for Medicaid in-home services and for spots in facilities that do accept the program's funds. Critics say the system is artificially impoverishing the middle class and overburdening itself. Judy Feder calls Medicaid "an enormously valuable safety net," but notes that "it's only available to you when you are either poor or have exhausted all your resources. It clearly doesn't protect people from financial catastrophe. It protects you only after catastrophe strikes."

Agapé at least proved to be a safer home for Jackie. It wasn't as nice-looking as Lexington Gardens—it was older with dank hallways—but the staff was better trained. They kept Jackie cleaner, in matching clothes and combed hair. There were fewer falls and almost no urinary tract infections or hospital visits. A nurse taught me how to safely help Jackie stand after she went to the bathroom. Most days, Jackie seemed happier and more alert. But, of course, her Alzheimer's was still progressing. In August, she was found in another resident's room, hitting her in the head and screaming. She was moved to the Vista, Agapé's specialized dementia care unit, which had individually locked rooms and increased supervision at $930 more a month.

Agapé helped me find a realtor. I sold Jackie's house to a man who flipped it. Last July, he proudly showed me around the house my grandfather built, which he had gutted to put in a sunroom and a breakfast nook. The money from the sale paid off Jackie's remaining debts, leaving her with around $38,000. At the rate we were going, that amount would cover six months of her care.

IN MANY DEVELOPED countries, long-term care for citizens with dementia is a priority. In Finland, access to long-term care is enshrined in the nation's equivalent of the Bill of Rights. The Netherlands has created a specialized dementia village for residents, to improve their quality of life. In 2001, France became the first European country to launch a national plan to deal with Alzheimer's and related dementias. The policy emphasizes improving dementia care, including educating families about services and residential-care options. In several other countries, it's a family's right to have ongoing help with coordinating care and services, according to Laura Gitlin, who directs the Johns Hopkins Center for Innovative Care in Aging. "With a diagnosis of dementia in our country," she says, "the family gets the diagnosis, and that's it."

There are pockets of the United States that are creating innovative solutions for Alzheimer's long-term care, but they vary enormously by state, and access to them is largely a matter of chance and geography. Minnesota ranks first on AARP's state rating system for long-term-care options. The state enacted an early, exemplary Alzheimer's plan in 2011 to increase detection, quality care, and awareness; Minnesota could save nearly $1 billion over the next 15 years if the plan's enhanced supports for caregivers are fully applied across the state. New Jersey is one of several states that piloted a Medicaid program to allow people to hire an at-home personal aide, who can be a family member. Florida has 15 Memory Disorder Clinics to diagnose conditions and coordinate care. There are experiments happening at universities and big research centers to find more cost-effective ways to provide better dementia care. And throughout the country, small group homes are popping up that provide more hands-on assistance for the same price as larger facilities.

In 2010, in an effort to better coordinate U.S. efforts, Congress unanimously passed the National Alzheimer's Project Act, which authorized the creation of a national action plan to combat the disease and related dementias. In 2012, the Obama administration released its National Plan to Address Alzheimer's Disease with the ambitious goal to "prevent and effectively treat Alzheimer's disease by 2025." The plan has many worthy initiatives; but while advocates applaud the heightened awareness it has brought to the issue, they also are quick to note it isn't a panacea. "The National Plan is a beginning, and that's all it is," Gitlin says. "It does not go far enough and it has to go further."

"It does focus too much on a cure," Gleckman says of the plan. Others agree. "We obviously need to find a cure to stop the pipeline of people getting this disease," says Steinberg, of the Alzheimer's Foundation of America. "But, in the meantime, there are still people coming down the pipeline who need care. Both sides of this disease need to be addressed." Says Gitlin, "The issue with the National Alzheimer's Project Act is striking the right balance between cure and care. We're all for the cure, but the emphasis on care must be, in terms of dollars and policy, equivalent, if not more so, than the cure."

Many care-oriented goals in the plan offer well-intentioned but superficial fixes. Short-term webinars by various government agencies for health care workers and providers appear throughout as evidence of training people about dementia, and the document cites the distribution of instructional videos as proof of strengthening the direct-care workforce. "A series of videos, 'Hand in Hand,' were developed and disseminated to every nursing home in the country," the plan says. The dozens of strategies in its 83 pages range from convening Alzheimer's research summits to assessing family caregiver needs, but the document—which has been updated yearly since its release—does not offer concrete steps to pay for its initiatives, leaving that up to government agencies. The plan is still a work in progress, and many of its action items are forthcoming, such as a survey on attitudes toward long-term care and a panel on advanced dementia. One vague and bureaucratic-sounding goal promises: "Through a learning collaborative process, a tool will be created to help states measure whether they are improving the dementia capability of their systems."

"We're all for the cure, but the emphasis on care must be, in terms of dollars and policy, equivalent, if not more so, than the cure," says Laura Gitlin, who directs the Johns Hopkins Center for Innovative Care in Aging.

Even if Congress hoped to jump-start the search for an Alzheimer's cure with the plan, lawmakers have shirked fully funding that effort. The 2014 federal budget included an increase of $122 million for Alzheimer's research, the largest hike ever—but still a far cry from what's needed. Congress's own advisory group, put in place by NAPA, has recommended that the federal government spend $2 billion per year on research for Alzheimer's and related dementias over the next decade, which would put it on par with other major diseases. Federal Alzheimer's research funding is headed in the right direction, but it still does little to meet the ambitious goal that the administration's National Plan promised: an effective treatment by 2025.

Earlier this year, Robert Egge, who directed the study group that spurred the government to create a national plan, wrote in the journal Health Affairs that strides had been made nationally on Alzheimer's, but the disease was not yet "a top priority either for the administration or for Congress as a whole." Last November, Sens. Susan Collins and Amy Klobuchar introduced a resolution that would specify that treating and preventing Alzheimer's by 2025 was "an urgent national priority." It hasn't come up for a vote.

Alzheimer's remains a winning topic for policymakers to address, even if tangible reforms are hard to find. That ethos was on display this past February, when the comedian Seth Rogen testified in front of a Senate subcommittee about his mother-in-law's early-onset Alzheimer's. The hearing was sparsely attended—not a rarity on Capitol Hill—and a few lawmakers left before Rogen's speech, in which he implored Congress to help ordinary people deal with the financial and emotional strain the disease causes. Afterward, Rogen tweeted, "Not sure why only two senators were at the hearing. Very symbolic of how the Government views Alzheimer's. Seems to be a low priority."

The single biggest help to many families coping with dementia would be to reform the long-term-care market. According to an AP-NORC poll, 58 percent of Americans 40 and older now favor a government-backed, long-term-care insurance plan similar to Medicare. After the Affordable Care Act's version of long-term-care insurance was canceled, Congress formed a bipartisan commission to review next steps. From the start, there were problems. The effort was understaffed, underfunded, and short on time to meet its deadline. Feder, one of the commission's members, calls the group "a consolation prize" that was tacked onto last year's fiscal-cliff legislation. The commission's final report ended with a stalemate on how to pay for long-term care. "It essentially avoided the biggest problem of all—the financing," Feder says. Some members believed private insurance would not be sufficient, but they couldn't decide what public supports were reasonable. "There are problems with the long-term-care products out there," Chernof, the commission's chair, told me, adding, "I think we need a new generation of planning tools for working families."

Feder argues that the only way to truly make long-term-care insurance affordable is to mandate it for everyone. That may be a quixotic goal in a divided Congress with fatigue over the Affordable Care Act's individual mandate. "It's not realistic to expect we're going to get a big, new government entitlement program to pay for this from the beginning to end. We saw what just happened with the Affordable Care Act and with the current political environment," Gleckman says. "But providing some sort of solution that includes a more attractive insurance program, perhaps with subsidies, and then a better Medicaid program—that is something that is possible."

In the end, it may be more about instituting commonsense reforms across the board nationally than about pushing for entitlement reform. What I thought I needed most as an Alzheimer's caregiver was relatively simple: access to an expert to help me navigate the system, whether that was a doctor, a nurse, or a social worker. And that is one simple recommendation that both the National Plan and the Commission on Long-Term Care have explored. My dad spent years caring for someone without any support, without knowing that she qualified for veterans' benefits and for some Medicaid services, or that there was adult day care and respite care that could have helped them both. By the time I found out these services were available, it was too late.

Gitlin notes that researchers like her are aware of more than 50 interventions—from training family members to home modifications to therapies for curbing behavioral issues—that are known to improve the lives and care of people with Alzheimer's and those who are looking after them. They're just not widely available or integrated into our health care system. "There is a lot we can do, and there is a lot we know we can do," Gitlin says. "But we just haven't done it because that's not where our priorities are from a societal and policy perspective."

Jackie and the author in the early 1990s, on a family beach vacation in South Carolina. (Courtesy of the Stanley Family)

LAST OCTOBER, JACKIE woke up struggling to breathe. A facility staffer called me a little after 6 a.m. to let me know she was being taken to the hospital, just in case, just as a precaution. This time was different, though. It wasn't a false alarm.

When I arrived at the hospital, Jackie no longer recognized me. She was listless and nonresponsive. Worse yet, she had lost the ability to swallow, a sign of end-stage Alzheimer's. In her advance directives, Jackie had been clear that she did not want a feeding tube or artificial hydration as her Alzheimer's worsened. Typically the human body can live a month without food, a week without water. If Jackie could not swallow, she could not live for long.

She went into hospice care, and we moved to the  skilled nursing side of Agapé. Even as she was dying, I struggled to get her the proper care. Hospice nurses circled us during the day, but at night, we were on our own with the regular nursing staff who typically managed rehabilitation services, not dementia patients or palliative care. It was a large and busy place, and nearly every shift I had to explain to a new face that Jackie had Alzheimer's and couldn't push a call button or tell them what she needed. I bondeed with an experienced nurse who understood. When she was on night duty, I could go home. Otherwise, I spent two weeks sleeping in a recliner by Jackie's bed. I was with her when she died on a Tuesday morning.

It is only in looking back almost a year later that I can begin to grapple with the decisions I made and the ones I wish I had made instead. Now I think that if I had only known she had so little time left, I would have gone all out, broken the bank, and poured the rest of my savings into putting her up in the nicest facility I could find. Or, better yet, I would have rented us a two-bedroom apartment and an army of nursing aides so I could have kept her at home, and been the one to wash her hair, sit with her at meals, and pick out her clothes. A year of that I could have managed, I sometimes think.

I often remember the days right before her death, when her delirium and discomfort were amplified, but she still had flashes of lucidity. One afternoon, as I bent over her hospital bed to turn her over, she looked up at me with what I took to be a glimmer of recognition. "I know I am cared for," she said. I only hope that was true.

Tiffany Stanley is a writer living in Washington.